1 Step forward, 2 Steps back

Hi everyone, new to the group, I was diagnosed in 2008 @ 27 after suffering for 4 years as I was misdiagnosed with Crohn's Disease in 2004. I live in a Sydney with a fantastic supportive husband and my darling daughter Ella.

So it's been a horrid week for me last sat my whole system flushed from my body, massive bowl explosion( sorry tmi, but I'm Australian) and I was so sick for three days after, I was finally feeling better and tonight my whole body is doing it again.

My endo pre my daughter who was born 9 months ago, was kept at bay with drugs, but now that doesn't work. And it seems to be worse now after having her.

I have a referral to see my ogyn who happens to have diverted my bub.

I already know what he's going to say- loose some weight which I am trying to do, I joined a gym and was starting to get my health back and then I had another attack. I feel defeted every time I start sorting out my health I have another attack.

I really hope my daughter never develops this disease as I hate it.

I just need someone to talk to who lives with this disease.

4 Replies

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  • It makes me so sad that more and more of us are coming forward with this atrocious disease. I always thought there was more then 10% of the world population with Endometriosis then the specialists say.

    As for the pain, we all totally understand you. I personally use to walk near 5 miles a day, and loved walking on the local trails. Now I can barely go for a 1/4 of a mile walk. ( last time I tried that, I was in miserable pain for 3 days!!). The dr.'s tell us to lose weight, but how can you when it hurts to bad to even just sit in the most comfiest chair you have?

    I don't have kids, but i do wonder that if i ever decided to have any; would I give my daughter this horrid curse? And as far as we can tell, no one on either side of my family tree has endo, so lucky me. :P

    Feel free to vent, ask questions, research, and share any info you have. This site has been such a wonderful thing for me. I have learned new things that may work, what to avoid, and just talk about all things endo that I make my friends and family annoyed because i talk about it so often. (Especially true when I was first diagnosed this year)

  • Hi JaneG79,

    Sorry to hear you are joining the ranks. I was just curious if you had tried any type of elimination diet. Such as removing gluten and soy from the foods you eat.

    A lot of us get misdiagnosed with IBS or IBD so if you check out the endo-resolved website there is excellent diet guidelines to try. I have been following it since the beginning of October and have lost 15 pounds. I've had to lower my cholesterol and triglycerides and I imagine it's done wonders for that as well, gonna go have my bloods retested tomorrow to see. It's not a cure all but they say diet plays a huge role in the amount of pain we are dealt with this dreaded disease. It's a long battle so whatever arms us with the will to survive, right? My mother never had this issue, but my daughter is exhibiting gastrointestinal pain and is following a gluten free diet now by her choice. She's had considerable less sick days and is functioning as a normal human being plus she has lost 40 pounds in a little over a year. She likes that there is a reward for the effort.

  • I'm going to start the endo diet when I can actually tolerate food again.

    I was for a time on a Fructose, Lactose and Gluetin Free diet but that didn't really help as I was still getting sick

  • hey hun I know exactly what you mean... I'm 21 years old and have been having problems with this since I was 16!!! its only this year that they finally told me what I'd got.. I have tried to keep going but had another really bad flair up this week as well... thing is no one really understands what we go through... and so they automatically blame it on other things like our weight... But if we weren't sick then we could lose the weight lol..... I know it's hard but hope you get sorted and start to feel better soon hun... I'm here if you need a chat :-) xxx

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